So, its been a few months since I have posted and I noticed Toby asking for updates on people. So I thought I would chime in. As I have said previously after hundreds of tests at Mayo Clinic. They diagnosed my tremors as benign muscular fasciculation.
Great... Now what. Well that didn't get much of an answer. It won't kill you and should eventually go away.
As a reminder mine is in the upper chest, and keeps me up all night. After extensive cardiac tests, tests for Lou Gherigs... Etc this benign muscular condition is what they seem happy with.
What I am doing now is taking.5 mg Xanax at night with Melatonin. It keeps me asleep for 6to 7 hours. I am also on cpap machine. This with a magnesium supplement has greatly reduced the tremors. They are there but not causing the anxiety... Fear... And dread I had for months. Waking up in the middle of the night in tears from lack of sleep and major tremors is gone.
I definitely think years of sleep apnea has been a big part of this. And stress adds to it.. But doesn't cause it. I went a week without the magnesium supplements definitely made things worse. So.. While I am still living with it it, it is greatly reduced and doesn't affect my life like it used to. Mayo keeps saying there research says... Eventually... This will pass. Yeah.. Thanks :)
I may try adding niacin as you guys suggested.. Can't hurt. But I swear by the magnesium (and by the way my good work should normal levels of magnesium) and my cpap machine helps. The Xanax just knocks me out.. And hopefully I can wear off that in a few months as I hate a benzo... Even.5 MG a night.
Biggest advice... This is not deadly and there are ways to lessen it. Don't give up.
Also... A sleeping ritual helps... Hot bath... With Epson salts... Herbal tea... Relaxing music... All help.
Take care guys... I'll check in more often.
Quick update - things continue to go well. Very well actually. Since starting niacin and in particular adding methyfolate I've been sleeping peacefully.
I also am not getting up constantly at night to use the bathroom. More often than not I'm sleeping through the night which in and of itself is a fairly remarkable change.
At this point I'm taking methyfolate, niacin/energy shot and probiotics. Since adding the methyfolate I've been needing much less niacin. I've also been paying attention to my potassium intake. I'm not doing anything specific there other than making sure I get a fair bit from my diet.
Apparently the MTHFR mutation is part of all of this. I assumed not for any number of reasons including the dr who gave me the test and another dr who is an 'expert' in the field was completely dismissive that it could be the problem.
Clearly it's more complicated than that though because I've had varying degree of success with GI specific interventions as well. And the electrolyte mix which I can use in lieu of niacin.
Quick update - a couple of weeks ago I met with the dr who ordered the OAT test. He was primarily focused on my low VMA and felt that was either indicative of a deficiency or COMT mutation.
His suggestions were SAMe and NAD. I tried SAMe that night and did not respond well at all. I took some niacin and that helped significantly. Since then I've been taking niacin on and off. I haven't had a lot of time but did a bit of quick research and am wondering about overmethylation. Seems counter to everything I've either read or been told at this point but niacin in small doses definitely seems to be a good thing. To much however is not good so it's a fine line which is consistent with what the dr said about methylation supplements.
Someone gave me a couple of bottles of 5hr Energy a while ago. I just happened across them the other day and read the ingredients. It had an interesting mix of a number of things I've been experimenting with recently so I decided to give it a try. I was expecting a negative reaction however it seemed to agree with me. Ended up buying more but Costco Kirkland brand. It's only been a few days trying the energy shots but from what I can tell I think it will be good. Maybe it's the niacin?
Since starting niacin sleep has been quite good. Same with the energy shots - what I like about the shots is I don't seem to be walking such a fine like with the niacin alone.
All of this is recent and may very well change but I wanted to share.
Also, I'm still talking the probiotics which are definitely a good thing however on the probitoics alone I still had some low level of sleep disturbance. More probiotics seemed to equal better sleep but not 100% peaceful. Then I came across niacin/energy shots and while I've found a number of things that have helped to various degrees this seems to be the most effective.
You mentioned you've been fairly active lately. Is there any correlation between your level of activity and the vibrations?
-b
So in other words, you're saying the "tremors" are actually real physical rhythmic motions whereas the vibrations are more of a neurological thing that you can feel, but that can't be observed? Is that right? I used to have something that felt more like a lower-frequency tremor that my wife could actually feel if she touched me. Those seemed to happen if I got woken out of sleep suddenly. I figured it was some kind of anxiety reaction. I haven't had those for a while.
The "vibrations" are higher-frequency and feel more like a light to medium electric current. For me, the vibrations are controlled by the Tegretol although I sometimes have some break-through vibrations (also around 4:30-5:00 am). However, even though the vibrations are mostly controlled, I'm still waking up multiple times a night with some sort of GI issue that usually included reflux.
A reminder that I have sleep apnea. I was recently fitted with a dental appliance since CPAP was not working out for me. The sleep dentist I'm seeing pointed out that sleep apnea can sometimes cause reflux since you create a negative pressure in your esophagus that actually ***** up stomach fluids (sorry for the TMI). I believe that my sleep apnea and definitely reflux and maybe some additional GI issues are part of the problem.
I'll write more later.
-b
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Well, this is a first. I can induce my vibrations by listening to certain low-frequency tones in earphones. It takes about a second or two to start, and stops immediately as I stop the sound. I can feel it in my face and neck quite palpably, and also down through the chest.
This one, for example:
https://www.youtube.com/watch?v=UQLyBj2TCuc
One audio clip that does the same for me says its tone is 1.8hz, which is in the theta range related to light sleep. But I really don't know what to make of it yet, and haven't had time to research. I suspect it's not brainwave entrainment, although I am very open to sleep deprivation as a cause. It could easily be a dysfunction of the ear (My tinnitus is not pulsatile, however. It's of the ringing kind.) Weird though.
Here is a completely different idea based on ricepeg's neuro's hypothesis that the vibrations are a symptom of some sort of PTSD. There is something called Dynamic Neural Retraining which is supposed to help you re-wire your limbic system to, among other things, deal with the symptoms of PTSD. I'm looking into this now. Google it if you want to know more. Attending the program is a bit expensive, but you can also get the program on DVD. Just a thought on a different line of attach.
Update: I had some Tegretol (Carbamazepine) left over from the last time I tried it so decided to try it again. At just 200mg (which is a very low dose), my vibrations completely disappeared. However, I'm still waking up a few times during the night, but without the vibrations and accompanying anxiety. Tegretol is an anticholinergic and a mood stabilizer so both of these properties could be helping me. This says to me that the vibrations are a symptom, but not the cause. No surprise there. I don't like these types of drugs, but IMO it's better than a benzo and again, this is a very low dose.
I've also been continuing with the alpha lipoic acid so maybe this is helping as well.
I've been reading a lot lately about the psychological/neurological effects of sleep disordered breathing (e.g. sleep apnea) and I can easily see how untreated or insufficiently treated SDB could produce the type of symptoms we're experiencing. Some of what I've read supports the PTSD hypotheses that ricepeg's neuro came up with. I'm going to try CPAP again in addition to my dental appliance to see what happens. I'm also going to visit the sleep neuro I saw a while back to see if she might have any additional insights/suggestions. I'm not very hopeful on that front.
Regarding the acetyl-l-carnitine (ALCAR) and palpitations. I found a couple of posts where people were complaining about this. One person said that she realized that what was really happening was that the ALCAR was causing reflux. Reflux/GERD can result in heart palpitations (as it did with me a few years ago). She took an OTC acid reducer and the problem went away and she was able to continue taking ALCAR. I suppose it's also possible that the acid suppressor was interfering with metabolizing the ALCAR. I've long wondered whether my reflux issues could actually be causing the vibrations (or at least the wakenings that cause the vibrations) as well. So this all seems to fit...sort of. I may start taking a PPI (although I don't like those medications either) for a short while to see what happens. Note that some forms of SDB can actually cause reflux by creating a vacuum that sucks up stomach acids.
I haven't checked in for a while because I haven't had anything new to add until recently. My tremors have been minimal to moderate and only in the last 2-3 hours of sleep. So basically what they have been for quite some time now.
I followed the methylation thread to every possible end and in summary methylfolate is a good thing. Same with folinic acid however pretty much anything else that is a methyl donor doesn't agree with me.
After several false starts looking at other things I focused again on ammonia. Yucca has consistently been a good thing. A while ago I added L-ornithine and that was a good thing. Then a couple of weeks ago I added carnitine fumarate. L-carnitine resolved my tremors but gave me wicked palpitations. I was hoping the fumarate version would be better and it seems to be. Resolved what little tremors were left but I did get minimal palpitations.
GI bacteria are one of the causes of ammonia (which would explain the GI connection) so I decided to try adding FOS and VSL3 (probiotic). I tried VSL3 before with minimal results but with FOS this seems to be a very good combination for me. My tinnitus is 1/4 of what it's been and I've had no tremors at all that I'm aware of in spite of slacking a bit on the ornithine/carnitine/yucca. To me the decrease in tinnitus is as telling as the tremors themselves since the 2 are definitely related for me.
Things continue to go well. Sleep is peaceful. I've upped the amount of methylfolate to 800 mcg from 400 mcg. At the 800mcg level I haven't had the need for niacin or anything else. So it's looking more and more like MTHFR is the root cause of things.
Out of curiously I bought some TMG (betaine) because I'm still trying to figure out why the betaine HCl helped. Betaine is a methyl donor and based on my negative reactions to other methyl donors (SAME in particular) the HCl should not have been a good thing. But it was. The TMG agreed with me however since things are pretty good these days I can't make much of a judgement. But it definitely wasn't a bad thing.
It's been almost a month since I started taking methylfolate so a this point I believe this is the solution for me. I also feel better all the way around.
So, while I'm certainly not saying that we're all suffering from a panic disorder, I did recently run into this statement in a post about panic disorders:
"One line of current thought is that people who are prone to panic attacks are hypersensitive to small changes in their bodies’ biochemical milieu. An example of this is the way in which people respond to carbon dioxide (CO2) in their environment. Everyone’s brain monitors CO2 levels (subconsciously) to detect levels that are high enough to indicate the potential for suffocation.* Researchers have shown that in normal people, there must be a sizeable change in CO2 levels to set off this suffocation response; in people with panic disorder, however, even an insignificant rise in CO2 levels can trigger a full-blown panic attack"
So what if there were something else that caused hypersensitivity to CO2 changes? This would account for the feeling that some of us have that we've stopped breathing or are breathing poorly.
I have an interesting and somewhat surprising update. As I stated in my last post I wanted to get back on an 'even keel' after my trip before trying anything to do with neurotransmitters. As part of that I started taking a probiotic that I had leftover from a couple of years ago when I was focused on my GI.
I stopped the licorice root which was the only thing I was taking. Stopping the licorice resulted in the vibrations returning at a light to moderate level (my 'normal' at this point in time I believe). However, once I started the probiotic the vibrations diminished to the point of being barely noticeable. I believe I can correlate the vibration intensity with the amount of probiotic I take. For example if I take the probitoic 2x per day my vibrations seem to be more noticeable than if I take probiotic 4 or 5x per day. This wasn't part of an experiment - just life getting in the way of taking the probiotic as planned.
It's only been a week so there's still plenty of time for this "solution" to fizzle out but I wanted to share the info. I'm using a 12 strain, 20 billion/capsule probiotic.
Hmmm. The whole 4-5am thing is interesting too. In various other Googling I've done, that seems to be the magic timeframe for people who have sleep problems. Maybe that's just when we start to cycle out of deep sleep more frequently. Everyone wakes up periodically during the night. Maybe we just notice it more because of the vibrations which then tend to keep us from going back into deeper sleep.
-b
Wanted to check-in, provide an update and see how everyone else is doing.
About a week after my last post I started getting mild vibrations starting around 5AM or so and lasting until I got up. Mildly annoying at worst.
Prior to starting the HCl I was having tremors - to me those are significantly different. I define tremor as a rhythmic motion. Those were significantly more intense and the more intense the tremor the worse I would feel for the 1st few hours of the day. Longer if the tremors were intense. A hangover is the best way I can describe it - the intensity of the "hangover" being directly correlated to the intensity of the tremors.
With the vibrations I always wake up feeling fine. So to me while the shaking part may be somewhat similar they do seem to be quite different animals.
As far as I can tell nothing changed between sleep being peaceful and the start of the vibrations. They started very slight - wasn't sure if I was having any type of motion or not - and got a bit more intense. I can now clearly notice them but outside of being a bit annoying I'm not having any type of issues.
That being said, it's obviously not "normal" and I have to assume that my body still isn't 100% happy with something.
I still believe it to be nutritionally related. I believe the addition of the HCl allowed for better absorption which eliminated the tremors. Why the vibrations started is beyond me. Maybe the addition of the HCl favors absorption of something at the expense of something else? That's my best guess.
I'm paying attention to things but am not being strict in any respect. To this point I cannot correlate the vibrations to anything diet or lifestyle related.
I've continued with the HCl as described before and that's pretty much it. I've experimented a bit with some of the other things I have here but without any real success.
As I write this I'm wondering if reducing the amount of HCl may make a difference. Too much somehow creating a different imbalance or "over-correcting"? I'll give it a try and post results.
Great info as always Mike. Maybe I'll give the copper a try and see what happens.
One thing that continues to be different in my case is that I'm still clearly having some GI issues. Pretty much without fail, when I'm woken up during the night I feel like I'm having some kind of heartburn. I had a pretty bad bout of this a few days ago and I thought maybe I was overdoing it on the HCL supplements, but it also could have been something I ate. I had a sort of big lunch that day that contained breaded pork which may have disagreed with me for some reason. I remember a few years ago the first time I had a massive GI problem was just after I ate some store-bought fried chicken (which I love). I was in pain for days after that... So maybe it's a gluten thing although I've fairly careful (except for that one lunch recently) about staying away from gluten.
Thanks once again for sticking with this Mike even after you're feeling better.
-b
Well it's nice to find a thread with similar symptoms to mine, and also disappointing that so few have had good results. My tremors or spasms began 3 months ago. Happens about 10 min after lying down. Either to sleep or a nap. Keeps me up all night. Tremors center in my chest and back. Fingers tingle as well. Very similar to all others here I have gone through every test around. Cardio ok. Endo ok. Neurology ok. Gastro ok. Only thing they discovered was severe sleep apnea. Been going to mayo . On propranolol and Lunesta for sleep. That helps somewhat . Tried herbal supplements as well. I am surprised with all this time on this subject there are so few answers.
Glad the clonazepam is giving you some relief Toby.
So I have been on clarazapam for a couple weeks now. It doesn't fix tremors but looking at my Fitbit sleep I went from waking or agitated sleep 15-25 times to one 3-5. I still tremor but now not near as many times. Very little side effects. I like the confidence enhanced feeling too. Not sure how long my liver will like it though. I am only on 2 mg per night. Once you take the pill you have about 1-2 hours then it is bed time.
I would like to see this thread resurrected. Some of us may be have further insights to share with others.
I am not sure if anyone will see this, but I have found a practical way to get to the end of this long thread without having to manually click through each page. Here's what works for me, at least in Chrome browser on a desktop computer. I simply type CTRL+F to search within the page, and search on the phrase "have an answer". This jumps to the bottom of the page, which automatically keeps triggering the page loading script until the thread is fully loaded. It takes a couple of minutes, but you don't have to watch it and can switch to other browser tabs. At that point the site functions normally without issue. If you're seeing this at all now, you're probably someone who has already clicked on "Notify me of new activity..."
Instead of "have an answer," alternatives that work are "notify," "respond," and "new activity."
I have been able to confirm that hooking the back of my neck up to a TENS machine enables me to instantly kill the internal vibrations with the click of a button.
I decided to try this because, as previously related, I can achieve that effect by tapping my fingers on the same area.
I decided to go to sleep with the machine attached so I could experiment during waking up, when the diaphragm area is vibrating the strongest. I did have vibrations in my legs as I lay down to sleep, as is fairly typical, and was able to kill those with the TENS. The vibration is occurring, I start and stop the pulse, and the vibrations have completely stopped. This was also the case in the morning with the chest tremor.
I don't know the frequency (it's a cheap machine), and don't think it matters. I don't know if it's the electricity per se, or the way in which it vibrates muscles (as the finger-tapping would), in turn presumably jolting a nerve (vagus?).
Given this interesting result, I'm going to run the machine periodically in case it serves to stimulate the vagus in the manner of possibly being therapeutic.
It's also got me focused more on the ways in which my vagus nerve might have become irritated, including postural issues leading to reflux (hernia?) and also chronic pressure in my neck, which bends to the right. It may be that the thing that unites us all is irritation to the vagus nerve, even though this could occur in multiple ways. I am still struck by the fact that Toby also experienced what I did with the vibrations being triggered by listening to a certain tone. I also want to just note here that a woman on this thread got over the vibrations after discovering a slipped vertebral disc in her neck, or something along those lines.
I just finished a book by a Dr Nemechek who has developed protocols to treat autonomic nervous system dysfunction. (I believe that the sleep vibrations are a symptom of ANS dysfunction). His book is primarily concerned with his protocol for autism, but it can also be applied to ANS dysfunction which he believes is due to systemic inflammation. The main parts of his protocol involve treating Small Intestinal Bacterial Overgrowth and lack of Omega-3 fatty acids. In certain cases he also prescribes transdermal vagus nerve stimulation. Many of the symptoms he describes resonated with me and I may look into seeing him at his clinic near Phoenix, AZ.
I highly recommend you get a copy of his book (it's a quick read) to see if anything resonates with you. Just do a search on Nemechek Protocol. You'll find his blog and a few videos. If you search hard enough, you can also find a description of his protocol. He also has a quick checkbox test to see if you fit the criteria for ANS dysfunction. I checked many of the boxes.
How is everyone? I am doing ok. Still no tremors, but experiencing memory issues. Sometimes my mouth doesn’t seem to work right. My face feels tight. Not sure if it is related.